Thru Grief, Hope, Dreams, Love and the blessings of God.. I am moving ahead after Twin to Twin Transfusion Syndrome changed me forever.
Sunday, December 13, 2009
The worst day of my life
I hardly slept last night...I can't waking up thinking that I should be feeling horrible, that I should be thinking of nothing else but the horrible news we learned one year ago today but instead everything was just jumbled up crazy dreams. And so I thought maybe this isn't going to be so bad after all....maybe it'll be just another day.
And then I woke up and reality set in and I've been fighting to be my composure ever since.
How can one little boy who I never even truly met affect me so deeply...because he's my son, my flesh and blood, identical in looks to the little miracle that blesses me each with his laughs, smiles, hugs and kisses. I wanted a life with him so bad and I wanted to be his mommy. I thought I was doing so much better in this grief journey but the last few weeks have proven to me that no matter how far I get there will always be things that will send me spiraling backwards. Right now my heart feels ripped apart, my arms ache to feel Cole in them and my desire to turn back time is so very intense. I WANT MY BABY BACK!!!!
I am pretty certain this day is a write off...unfortunately I can't just curl up in my bed and spend the day feeling sorry for myself. And yes I know I should say fortunately...but right now I just want to do that. Instead I will be busy with my family and out at church for our Christmas concert. Hopefully that will help with this horrible day. Later this afternoon we will be preparing sky lanterns for a balloon launch for Cole. We will draw on beautiful paper lanterns, create messages of love and wishes for Cole. When it is dark we will travel out to his garden (if we can find it in the snow) and light the lanterns and watch them rise to Heaven.
Right now I am finding it very hard to write, to talk about how I feel so I think I will attach the next segment of the story that I've written...the account of Dec. 13, 2008. I may come back later and write some more and I know that tonight or tomorrow I will post the tribute video I've made for my little angel.
Thanks for reading this, for being my friend...for supporting me in my worst moments!
The next morning I awoke early and felt strong kicking, especially on Cole’s side of my uterus. I was so confident that this meant good news and I emailed or called everyone to tell them how things had gone the day before.
At 11:00 we arrived at the children’s hospital next door and the fetal echo began. The doctor doing the scan asked which side the recipient baby was on and then sucked in his breath sharply. Without looking up at us or stopping he said “This baby has no heartbeat. Your baby has died. I’m sorry, your baby passed away”. And the world crashed around us. All I wanted to do was curl up and cry, all I wanted was to be left alone with Geoff to cry and hold each other. Instead this doctor was all business and after a minute or two he said “I’m very sorry Mrs. Tummers, this should have been checked before you left Mt. Sinai but I still need to scan the other baby... please you need to calm down so I can scan you.”
The doctor told us that all seemed fine with the other baby. We asked him what this meant for the other survivor and he said everything should be fine but Dr. Ryan will confirm that. But what about the other baby…what will happen now was my question. And the most devastating (and incorrect answer) was given to me…your body will just absorb him.
And I sobbed and sobbed. Not only was I not going to get to have my twins together, not only was I now the mother of an angel baby, but I was never going to meet my angel, it would be like my baby never existed. He was wrong, this was explained to me later that day but at the time it was the most devastating thing.
We were quietly left alone in this area of the heart clinic while the doctor went to call for a porter for me and to let the floor nurses know what had happened. We held each other and sobbed. Geoff was having a very tough time remaining still. He kept leaving me and going to make calls to let our family and close friends know.
Later, after we returned to Mt. Sinai my parents called to say they were on their way…which of course evoked another round of sobbing. I just couldn’t believe this was all happening. By the time they arrived we learned we had another crisis on our hands….
Dr. Ryan had come in after the staff called to tell him what had happened. He scanned me again and confirmed that Cole’s heart had been very very sick and he’d gone into heart failure. His abdomen was even more full of fluid now, in death, then it had been the night before. His concern now was Cameron as his MCA (medial cranial artery) readings were showing that he was now anemic. Dr. Ryan was very confident that all vessels had been cauterized and this change in his health was due to a final rush of fluid from him to Cole as the last vessels were sealed off. Much scanning and rescanning was done, the question seemed to be was the MCA high enough to warrant a blood transfusion…another risky procedure. However this wasn’t all they were looking at…one doctor who scanned me told us, devastatingly, that they needed to make sure that this blood transfusion wasn’t just saving a very sick baby. Eventually it was determined that it needed to be done, very soon, and was scheduled for as soon as the blood was available.
My parents arrived and we were all so very emotional. My parents had been so very overjoyed about us having twins. My mom had shopped her heart out just weeks before buying two of everything (well actually 3 since my brother and his wife were also expecting). My dad is a fairly emotional guy when it comes to us kids, especially his only daughter. It was a very tough afternoon and evening waiting for the blood to be ready.
My dad stayed with me for the procedure which was very touching and very comforting. The room was filled with staff…. 3 doctors, 2 nurses assisting Dr. Ryan, a nurse helping with the blood transfusion and a lab technician. The procedure was a bit uncomfortable as they use a needle similar to an amnio needle and they put it in at 2 or 3 different places. They remove a sample of blood and check the hemoglobin levels right there in the procedure room. Cameron was given 40 cc’s of blood and after cleaning me up I was wheeled back to my room…to wait and hope and pray that my surviving twin would indeed survive, that there was no damage to his brain.
The next day they checked his MCA and thankfully it was already coming down. They checked my cervix…thankfully still closed and long…and sent me home with follow up and MRI’s scheduled for later that week. That drive home was one of the strangest that I think that I will ever have, it seemed to take forever and yet was like we had never left Monkton. As we drove into town we both cried as we realized how completely and forever different our lives were from when we left for work only 3 days before.
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